Spasticity/Involuntary movement

General Discussion
#1

Hi everyone,

Scrolling through forums I see people here have had lots of twitching, fasciculations, etc. I am having like really weird involuntary movement and spasticity. Almost like jerky spasms in arms, legs, etc. It’s so bizarre. My tests recently showed slightly elevated creatine kinase (569), as well as a positive ANA (1:320) of “coarse speckled pattern”.

In light of these developments and my symptoms, I have scheduled an EMG in order to rule out things like Amyotrophic Lateral Sclerosis, Fibromyalgia, and things like Polymyositis.

Has anyone else suffered from these types of things, like what feels like mild Parkinson’s or Tourettes movements? I am very anxious right now.

Thanks.

1 Like
#2

I had these for months, even took videos because it was getting out of control. I still get them the odd time but they have calmed down a lot. I never did get to the bottom of it

#3

I had them in my legs when going to bed for a while. Thankfully with time they have gone.

#4

Yeah it’s mostly my upper thighs and legs but sometimes shoulders/upper arms. Super weird. Like I can’t control them.

#5

With luck, they’ll disappear of their own accord.

#6

Yes, I have been very aware of this myself, and I didnt even take Fin, I took Accutane.
My creatine kinase was in range.

#7

Did you notice that your legs got smaller or a change in skin? like my veins are more prominent now and my legs themselves are much thinner.

#8

I feel like I’ve lost muscle mass all over. I’ve been going to the gym and feel like I’m starting to get some back.

As to whether it’s some sort of toning or actually muscle growth, I don’t know, but I feel a little bit more like myself than I did.

#9

Gotcha. It’s weird. my upper body seems to be able to retain mass but no matter what I do my lower body atrophies. My legs are like sticks at this point.

Fortunately, it looks like nobody here was officially diagnosed with multiple sclerosis/als or neurogenic disorders. But I’ll report back. Getting an EMG in a couple weeks.

#10

Are you training at the moment?

I have never done lots of weights or exercise but I’m going twice a week at the moment. I do some weights and cardio every time.

I know some people here don’t get on with exercise, so your mileage may vary but I feel it’s doing me some good. People talk about a happy feeling after exercise, I don’t really get that, but today I did feel a sense of achievement and generally happier so perhaps that’s a sign of something slowly realigning.

#11

Yeah, training 2-3x per week. I do leg exercises and walk as well but there’s no way to retain the muscle.

#12

Sorry to hear that.

The only thing I do is avoid any 5ar inhibitors that I can. Perhaps you should do the same?

If I’m honest, I’m not sure how much good it does. I don’t know how long you’ve been off but hopefully, you’re slowly transitioning back to health.

#13

have you tried out asparagus/tribulus ? I have read some crazy stories here about it working.

#14

Yeah, I avoid asparagus. I’m under the impression that it’s caused crashes with some people, same with various supplements. I’m going to stick with a broadly stable, cautious approach. I don’t think the health food shop has a cure for this.

#15

The very first symptom that I had back in August were fasciculations in both legs below the knees. Scared me to death.

Saw a neurologist who did some tests and thankfully he ruled out MS or ALS and determined the condition was benign.

Since then, I found out about PFS. The timing is perfect. The twitches started a few weeks after stopping Fn.

They persist to this day, but I’ll take the twitches over the general anxiety any day.

#16

Did the doc do an EMG?

#17

Yes he did.